Craniosyntosis & Chiari?

[eques33]

Son was recently diagnosed with Chiari, just saw neurosurgeon for first time. He mentioned that he thinks chiari has been caused by the skull fusing before it was ready (he is 13), causing crowding etc. Ordered more tests to confirm. He didn't say to much, showed how crowded it was, concerned about pressure and affect on eyes etc.
seemed very thorough, from what he said I have figured out he is probably talking about craniosyntosis? and the chiari is caused by this. He said that because he is asymptomatic (only fatigue) he won't need surgery, thank goodness,
but doesn't think he will need to have follow images etc. Just was wondering if any has had any experience with this diagnosis. From what I have read seems like all of this is such an individual thing and follow up images should be made to confirm no changes as he grows, especially because he is not done growing yet!

Just wondering if anyone had any thoughts, thanks,Mary

[kjsd]

My son was born with  mild craniosynostosis. His chairi  was just diagnosed two months ago after beginning to experience symptoms.  He is  almost 24. His symptoms are mild, but did have our first appointment with a NS; Dr. Batzdorf.  Surgery has been recommended to avoid further progresson and complications of the existing compression, as well as to incease the CSF.

Interesting now that I know that my son has chairi, i think i will have my slef evaluated. i have had meniers like symptoms for a few years a while ago; nausea, vertigo. balence issues, and hearing loss.  These symptoms are gone, though occassionally i will  have brief episodes of vertigo. Actually this summer i am having problems with mild dizziness  sometimeswhen i move my head up and down.  I still have hearing loss.  Never attributed these symptoms to anything else, but possibly a meniers like syndrome. Fortunately, I feel pretty good, but I may now have myself check for chairi.

[cranioNheartmom]

I can tell you that I have mild craniosynostosis that wasn't dx'ed until my youngest(who is now 10) was born with craniosynostosis.A year after his birth and right before his second surgery for craniosynostosis I was in a head on collision and was seen by my son's NSG and was dx'ed with Chiari.
My son's NSG was telling me that a lot of craniokids also have Chiari and a good bunch of craniokids mom also have Chairi and don't even know it..

Martha

[selmaS]

Hi Mary.....yes, u deff need to have follow ups....the herniation can be triggered by a fall or bumpy car ride ect, so he needs to be careful in the activities he chooses to do.

Depending if the herniation and the overcrowding r not causing a CSF blockage then his symptoms may be less than being considered symptomactic.

But do mem a favor...ask him some basic questions....( I was symptomatic as a child, but would have said no to the symptom on a list bcuz i thought it was a normal feeling bcuz I always had it)

Did he ever experience bad "growing pains" in his legs?

Does he get a sharp pain when having a bowel movement?

Does he get sick if he swings on a swing too long, or looks at a merry go round.....??

Does he have a balance issue walking on a black and white checker board floor?

Do lights or loud noise bother him?

Does he have ne sounds in his ears when it should be quiet?

Remember these symptoms can cycle...they do not have to be constant.
But remember, chiari is congetial and if u have something all the time it is easy to overlook it and not consider it a symptom.

Plus, has he been checked for tethered cord, a syrinx. or EDS?...did he have the CINE MRI to look for a CSF blockage?

"selma"